The Consortium

WORKING TOGETHER TO IMPROVE CARE FOR DYING PEOPLE

Meet the site leads

14 Organisations  |  13 Countries

PROJECT CO-ORDINATOR
Professor Agnes van der Heide

Erasmus University Medical Centre

Netherlands

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"Care for people in the last phase of life is one of the most important social, personal and healthcare issues of the 21st century. The iLIVE project is aimed at gaining in-depth insight into the concerns, expectations and wishes of patients in the last phase of life and their relatives.

 

In a unique prospective cohort study in 11 countries, 2200 patients with a serious advanced illness will be questioned on their personal experiences. We focus on adult patients with different diagnoses in various care institutions".

Professor Agnes van der Heide

Erasmus University Medical Centre

Netherlands

Professor John Ellershaw

University of Liverpool

United Kingdom

John Ellershaw

"As the joint lead of Work Package 3, I look forward to collaborating with the group to make a real and sustainable improvement in end of life care by developing a training programme that will enable volunteers to support dying patients and their families in the hospital setting".

Professor John Ellershaw

University of Liverpool

United Kingdom

Professor Raymond Voltz

University Clinic Cologne

Germany

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"Hospitals are the most frequent place of death in Germany, with about 47 percent, but at the same time dissatisfaction with the course of the dying phase is greatest here, as own studies have shown. Improving care during the dying phase is therefore an essential task for our healthcare system and
I am pleased that iLive enables us to contribute to optimizing the care of dying patients,".
Prof. Voltz is leading the study at the University Hospital of Cologne together with Dr. Julia Strupp and by support of Melanie Joshi (research associate)

Professor Raymond Voltz

University Clinic Cologne

Germany

Professor Carl Johan Fürst

University of Lund

Sweden

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"iLive is a unique multinational research collaboration on the care of severely ill and dying patients. The group at the Palliativt Utvecklingscentrum in Lund and clinical sites in Skåne, will be part of a project on improved management of medicines for patients in palliative care. Our group has the responsibility to work with the handling and processing of data for the iLive group as a whole".

Professor Carl Johan Fürst

Lund University

Sweden

Doctor Urška Lunder

University Clinic Golnik

Slovenia

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In WP5, we are exploring cultural norms, values and experiences which shall be our guides in carving end-of-life care for our patients, not only according to their needs but also according to their cultural norms and values.

We are also ensuring adequate and respectful ethical research procedures and monitoring eventuel ethical issues and dilemmas during the study.

Doctor Urška Lunder

University Clinic Golnik

Slovenia

Professor Steffen Eychmüller

University of Bern

Switzerland

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Within iLive project, we will develop the first international Core Outcomes Set (COS) for best care of the dying person, developing internationally validated guidelines, regardless of their diagnosis and taking into account the different perspectives of patients, their caregivers, health professionals and researchers.

We are also participating in the development of a digital instrument for medication management at the end of life, as well as in a large cohort study.

We aim to make a substantial contribution to the quality of care and treatment in the dying phase.

Professor Steffen Eychmüller

University Centre for Palliative Care,  Inselspital. University of Bern

Switzerland

Doctor Marisa Martín-Roselló

Cudeca Hospice Foundation

Spain

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“This is a great opportunity to understand better the needs and worries related to end of life care, death and dying. We lead the Communication and Disemination strategies to create an important impact in our daily clinical practice, and also on a higher level, in public health policy making.

We want to extend the results to the general public and futher than the 13 participating countries. Although culturally different, at the moment of birth or death we are very similar”.

Doctor Marisa Martín-Roselló

Cudeca Hospice Foundation

Spain

Professor Dagny Faksvåg Haugen

Haukeland University Hospital, Bergen

Norway

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The Norwegian group is delighted to join the iLIVE project. Having been working for many years to improve care for the dying, and having coordinated the iCODE (International Care Of the Dying Evaluation) project, iLIVE is a natural continuation of our work. We strongly appreciate the possibility to collaborate with such a big, skilled international group. Our hospital is especially eager to join the volunteer study and expand their existing service to patients near the end of life, and their families.

Professor Dagny Faksvåg Haugen

Haukeland University Hospital, Bergen

Norway

Doctor Valgerður Sigurðardóttir

PhD, Head of Palliative Care, Landspítali - The National University Hospital of Iceland

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Iceland participates in a large international study The iLIVE PROJECT. Live well-die well.

The study is of an outmost importance for the development of palliative care in Iceland and further establishment of the service in the near future. Iceland is a sparsely populated country with rural areas at the coast side. However, the main population is situated within the urban area on the southwest coast around the capital Reykjavík.

It is the hope of the Icelandic research team that the results from the study can be used to empower further the service for patients and their families at the end of life.

Doctor Valgeður Sigurðardóttir

PhD, Head of Palliative Care, Landspítali - The National University Hospital of Iceland

Professor Anne Goossensen

University of Humanistic Studies

Netherlands

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For the Netherlands bringing palliative care volunteers into a hospital is innovative and promising. Volunteers represent a special resource in palliative care, often forming a liason between patients, professionals and family members. They fill a 'liminal space' and prevent loneliness of patients at the end of life. This large scale study combines an effect measurement of their presence and offered compassion with inspirational clarification of what volunteering in hospitals can be and bring in a narrative way. We hope that will inspire volunteering practices in other European countries and improve patient care.

Professor Anne Goossensen

University of Humanistic Studies

Netherlands

Professor Judit Simon

Medical University of Vienna

Austria

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"The Department of Health Economics of the Medical University Vienna is leading the work package “Cost Effectiveness” in the iLIVE project, that will evaluate the cost-effectiveness of the two innovative interventions, the medication digital tool study and the hospital volunteers service, including further development of relevant methods in the area of palliative care". 

Professor Judit Simon is Principal Investigator together with Dr Claudia Fischer as Lead Researcher

Judit Simon

Medical University of Vienna

Austria

Doctor Vilma Tripodoro

Instituto Pallium Latinoamérica

Argentina

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"From Pallium Latin America Institute in Argentina, this transnational collaborative research work will become a forum for discussion and ideal learning for the exchange of ideas and approaches based on scientific knowledge.

We hope that through the inclusion of our patients in the international cohort (WP1) and our cultural representation, we will be able to implement care changes for our patients at the end of their lives, according to their preferences and values, as well as establishing the basis of a network of clinical work and long-term research".

Doctor Vilma Tripodoro

Instituto Pallium Latinoamérica

Argentina

Doctor Simon Allan

Arohanui Hospice Service Trust

New Zealand

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We are delighted to be part of the International effort to identify global standards and expectations around death and dying. The New Zealand research will include a unique Maori perspective which will enhance the cultural understanding of death and dying within the global perspective.

Doctor Simon Allan

Arohanui Hospice Service Trust

New Zealand

Associate Professor Mark Boughey

St. Vincent's Hospital

Australia

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Associate Professor Mark Boughey

St. Vincent's Hospital

Australia